Discussions By Condition: I cannot get a diagnosis.

Hot flashes, upper-left abdominal pain

Posted In: I cannot get a diagnosis. 22 Replies
  • Posted By: Anonymous
  • March 30, 2007
  • 04:05 AM

I have been experiencing the following for a year now 1. Very hot flashes on my back , shoulders and neck. Made worse by eating 2. Upper and lower left abdominal pain 3. Changes in taste - sweet to bitter 4. Severe headaches and general weakness. Tests performed so far include: 1. CT scan of abdomen 2. Upper endoscopy 3. Colonoscopy 4. Echocardiogram 5. X-ray of head 6.24 hr- 5-HIAA urine test for carcinoid 7. Blood serotonin level test for carcinoid 8. Pancreas, Liver tests 9. Thyroid level test 10. Numerous blood tests. I still do not have a diagnosis. I am running out of money fast. Please help!!!

Reply Flag this Discussion

22 Replies:

  • FYI...I have been experiencing similar symptoms for the past 3 years. I get severe abdominal cramps, explosive, watery diarrhea(sorry), facial flushing, almost fainting and sometimes vomiting. It hits me so fast sometimes and it is very scary...I have recently come home from Roswell Park in Buffalo NY. The doctor there was convinced(as well as 4 other doctors) that I had Carcinoid Syndrome. All 6 H5iAA's were normal as well as Chromogranin A ...still waiting on Seratonin levels, tryptophan and so on... Several Octreoscans and CT's later, revealed nothing. When I came home, I had an ultrasound of my thyroid which revealed a cyst. I went to ENT Dr., he scoped my throat and sent me for MRI of neck. At this time, I'm awaiting results. Carcinoid Syndrome, Medullary thyroid Carcinoma and Mastocytosis all share similar symptoms. I hope this info helps you in some way. If you want or need more detailed info...I have some. You can reply back on this thread...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Linx...How old are you? I'm 38 Female
    mommy cat 1,654 Replies Flag this Response
  • Hey Mommy Cat.Thanks for the reply. I am 28, male.I was diagnosed with Hyperthyroidism in October 2006. But the endocrinologist is certain my symptoms are not caused by the overactive thyroid. I am inclined to believe her because my symptoms started in April 2006, a time which my thyroid levels were confirmed as normal.Please give me a list of conditions that share the symptoms I described.:confused:
    Anonymous 42,789 Replies Flag this Response
  • Linx...Have you used the symptom checker on this site??? You can add and delete symptoms and it will cross reference and give you a list of diseases that contain those particular symptoms. It's on the home page. Try it out if you haven't. It's helped me out some...When I was seen at Roswell, the Doctor there said he had a handful of patients experiencing the same symptoms as I was,however at this time they have been unable to locate the site of any tumor. Those 5 people have at least one test positive for Carcinoid(.e. H5iAA, ChromograninA) mine are normal, yet my symptoms are the exact same. Like I said there is also Medullary Thyroid Carcinoma...You have trouble with the thyroid right? or Mastocytosis which is a condition of the blood, but only happens when you have a cancerous tumor. I'm going to add you to my buddy list so I can find you when your on,K? Also, sometimes if you just google symptoms(i.e. diarrhea facial flushing) it will take you to all kinds of pages with diseases containing those symptoms. I try to get on here every day so keep writing and perhaps we can solve our mysteries together. I've even thought...What if it's a new disease? what if that's why they can't figure us out? Sorry, been a nurse for 15 years. I've come to learn that anything is possibe....mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Is Serotonin test a definitive test for carcinoid syndrome? If not, are there other test I need to try? Which other conditions share the same symptoms - Hot flashes ( lasting hours) , left-side abdominal pain. The conditions seems to be getting worse each day. I hope the GI consultants will think a little more instead of letting the tests(endoscopy, colonoscopy, CT scans etc) do the thinking for them. I wonder whether doctors in US medical schools are taught to think anymore. Sorry, but I am disillusioned and frustrated!:mad:
    Anonymous 42,789 Replies Flag this Response
  • Sounds like you have had a ton of testing, that must be very frustrating when you don't get answers... What is your diet like? Sounds like if your symptoms are worse after eating you may want to check that out and perhaps do a food journal for a few weeks. Sometimes you don't find a pattern until you write everything down. Sounds too simple to be a food intolerance, but keep in mind it is very common and can cause all kinds of sporadic symptoms. Docs don't spend much time on this. In Chinese medicine, sweet to bitter taste suggests a Spleen/Liver imbalance. Do you have a lot of bloating and cramping after eating? Do you have loose stools or diarrhea or IBS symptoms? Do you feel a sense of heaviness in your limbs? Also, hot flashes are usually a yin deficiency sign. Do you have dry skin, eyes, mouth? Do you drink a lot of water and have a strong thirst? Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I kept a diet journal for my doctor and she did not detect any pattern. Besides,I have eating the same food for decades. I do have a lot of bloating and cramping after eating. I burp/belch a severely, even when I take water.I do not have diarrhea. I have dry skin, mouth, eyes. I do not drink a lot of water, especially when the water tastes bitter to me.What is a yin deficiency? I am interested.
    Anonymous 42,789 Replies Flag this Response
  • Linx...How old are you? I'm 38 Femalehey mommy cat did u ever had any surgery of ovaries or radiotherapy. do u have regular mensis?it may because of irregular menstruation .tell about your eating habits?
    Anonymous 42,789 Replies Flag this Response
  • Linx... Check out the carcinoidcancerfoundation.com as well as Mayo clinic and Roswell Park on the web. I found a lot of useful info there. H5Iaa is the urine test. It is tesing for the chemical which is a by-product of Seratonin breakdown in your body. Only 75% of patients have the ability to create the by-product. Just because your H5IAA was normal, dosen't mean it's not Carcinoid...certainly sounds similar to all of the info I've read and learned about in the past 6 mos. Did you have a Choromogranin A? Blood serum Seratonin level? Tryptophan level? Octreoscan is usually the way they find Carcinoid tumors...I've had 2 and they still can't find anything. Doctor says it doesn't mean I don't have it. My facial flushing only lasts 2-5 minutes, not hours. Which part of the country are you located? Perhaps I could help with researching doctors in your neck of the woods. Do you have health insurance? Keep in touch...mommy cat
    Anonymous 42,789 Replies Flag this Response
  • I had the blood serotonin test and it was normal. Mommy cat, maybe you may want to check our VIPoma of Systemic Mastocytosis. Good luck!
    Anonymous 42,789 Replies Flag this Response
  • LinxIn Chinese medicine the body is thought to have a balance of yin and yang - roughly you can think of yin as "cold, contracted, female, solid" and yang as "hot, expansive, male, and ethereal". When the yin is out of balance it may manifest as symptoms of dryness, hot flashes, headaches/dizziness, sensations of heat in the palms and chest, and other symptoms.When the spleen is weak, it causes the liver to overreact and this produces symptoms of gas, bloating, abdominal pain after eating, loose stools or IBS symptoms, as well as mood swings and low energy. Is any part of your abdomen tender to the touch? Are you taking meds for your hyperactive thyroid? What are they recommending for this? Sorry can't help you more, but I feel a certified acupuncturist who specializes in Chinese herbal medicine would be very helpful for you. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • hi was just wondering how accurate is the H5Iaa urine test, my son who is 14 yrs had a carcinoid tumour on his appendix, the doctor ordered the urine test because he keeps getting hot flushes, headaches dizziness and also his asthma is very bad, the test came back neg but he is still having these symptoms , is there anything else this could be....thx
    Anonymous 42,789 Replies Flag this Response
  • this is mommy cat... no surgery of the ovaries...however, polycystic ovarian disease. No radiation therapy. Been a nurse for 15 years...eat well. No food allergies. First episode of flushing was 10 years ago. For 7 years I suffered night sweats, vomiting and nightmares. For the past 3 years, severe diarrhea, facial flushing, almost fainting and at times vomiting...Dr. leaning toward Carcinoid Syndrome yet all tests are normal(so far) still waiting for a few more results. Thanx for the questions...glad to answer anything if it will help me in my quest...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Dear unregistered...re; H5iAA tests with carcinoid Syndrome. I attended a cancer center recently. Dr. there told me 2 scenarios. Female patient with normal Chrmogranin A but urine was 5 times the norm. Male patient with highly elevated CgA but urine was normal. Please note that only 75% of patients have the ability to change the Seratonin into the Hydroxyacetosometing that they are looking for with the urine test. A normal H5iAA does not mean there is no Carcinoid. Please feel free to ask any questions. My post is titled It's a mystery till we solve it...mommy cat. Please write back on that thread. I've been posted since March 26th and no one has responded to my post. Look forward to hearing more from you. Take Care...mommy cay
    mommy cat 1,654 Replies Flag this Response
  • Linx...Thanks for the info above. I've checked into thoses things but I think I'll go back and see if there is something I missed. Please keep in mind that I started with flushing that lasted 2 years and then the diarrhea started. It wasn't something that happened all toghether at the same time initially. I hope we find out something soon. There are 2 other posts with similar sx...prettyprettypumpkin and dream. check out their posts if you haven't. Maybe all us regular joe's can figure out more than the highly educated and highly paid Dr's. Good Luck and keep me posted...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • They did almost all the same tests on me after I had my third baby. After thousands of dollars of tests they sent me to an allergist who discovered I have a peanut allergy. I didn't just get sick with peanuts either, I apparently had such a build up of them that no matter what I ate I would get sick. Ask them what your eosinophil count was (part of your white blood count) if it is high it could definitely mean an allergic reaction... I think mine was at 32 and normal is between 0-5
    Anonymous 42,789 Replies Flag this Response
  • Hi Mommy Cat:Can you describe you hot flush. How hot does you skin feel? 110, 120? Which carcinoid test have you had so far. Blood serotonin, Chromogranin A, 5- HIAA...? Due you have nausea and abdominal pain. Where exactly do you feel the pain. Have you have a provocation test? You get injected with epipherin and if it triggers the symptoms, that might confirm carcinoid. On the other hand if it improves, then it confirms Mastocytosis. Good luck . For further information you can follow this link:http://www.clevelandclinicmeded.com/diseasemanagement/endocrinology/flushing/flushing.htm
    Anonymous 42,789 Replies Flag this Response
  • Dear Linx... My episodes transpire like this...First I start with severe abdominal cramps and watery, explosive diarrhea...then within about 30 seconds I experience facial flushing. My face, neck,chest and upper arms turn tomato red, I pour sweat so much that my hair is soaked after the spell(I have short hair) I almost pass out but then I get so nauseas that I begin to projectile vomit. I had a colonoscopy. For that test you have to drink a lot of this awful liquid. Well, I did and about 20 minutes after I started I got diarrhea(which this liquid is supposed to do to clean out your intestines) but right after the diarrhea, I went into the flushing, almost fainting then proceeded to vomit a half gallon of liquid I had just drank. It's bad enough when this happens of it's own accord but when you have to throw yourself into a spell to have a test that comes out normal...it's really aggravating. I did not know about the epinepherine injection for Carcinoid vs. Mastocytosis. Thanks for the website info. I'm going there next. Do you know which type of doctor would perform such a test? I will look into it...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Linx...check out this site ahummingbirdsguide.com let me know if it helps. I think I've just solved my mystery and perhaps it's the same as yours. The sx are similar to Carcinoid, mastocytosis, VIPoma ect...but there are several sx for this disease. It affects people 25-45. I was 35. More oftem women than men but it does happen to men as well. let me know what you think...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Thanks, I will check it right away. What do you mean "it solved your mystery"? Do you have a diagnosis. My doctors are still baffled. I was hospitalized for 5 days last week.
    Anonymous 42,789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Best Cough & Cold Meds for Kids

Help your child feel better, faster.

What HIV Positive Women Should Know About Sex

You can have sex after an HIV diagnosis.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement